Cumbrian councillor speaks out about daughter's battle with anorexia

Phil Dew has welcomed efforts to improve services for those with eating disorders, many of who have historically faced long waits for treatment or have had to travel miles outside the county.

Local health bosses have unveiled plans to establish a new Community Eating Disorder Service for children and young people.

It will focus on intensive work with families to promote recovery without having to send patients many miles from home.

Mr Dew said the efforts were a step in the right direction.
Cumbria County Councillor, Phil Dew

But he also wants to raise awareness of eating disorders, both to help prevent illness in the first place and make it easier for sufferers to come forward.

He has his own personal reasons for taking such an interest, and he now hopes sharing them will help to break down barriers.

"I've spoken in council meetings before about the experience I had with my middle daughter, who had anorexia and bulimia.

"I'm also a Methodist minister and have held funerals of people affected. There was one woman who committed suicide at the age of 49, having struggled with it for over 30 years.

"It's not just an issue that affects the individual. It affects whole families, and an awful lot of it is hidden from family members. It becomes quite secret. You do not tell you family you are sicking up in the toilet or in plastic bags and collecting them in suitcases."

He said it was a throwaway comment that triggered the problems for his daughter, who still lives in Cumbria.

At the age of 18 someone had said she was fat.

"She wasn't, but she'd always been sensitive to her image. It really affected her," he said.

"She went to Australia for a gap year and when she came back I didn't recognise her. She was like a walking skeleton," he said.

Mr Dew said that even once it was diagnosed, she found it incredibly tough to beat.

"It's so difficult. Even with drugs, you can stop taking them. With alcohol, you stop drinking it. With food what can you do? You can't stop eating. It's always there," he explained.

"It's like depression, you can't just have a conversation with someone and feel better. It becomes part of your personality.

"It takes over and becomes part of you. My daughter would say she couldn't think about anything else. All she could think about was food.

"She tried to commit suicide a couple of times because she simply couldn't get it out of her head.

"You become addicted to the rush. The chemical reaction. When you're sicking up it's not what it's doing to your stomach, it's what it's doing to your head. The way it makes you feel.

"You might start off thinking you want to lose weight, but it takes over."

It was an unexpected event that eventually turned her life around.

"The thing that really saved her life was when she fell pregnant at college.

"She came home and stopped her degree. She then started eating for the baby. That made the difference. She now has three children."

Although she has some long term physical health problems due to the damage caused by her eating disorders, she is now far happier and healthier.

"She says it's always there in the back of your mind, but she's doing really well. She's come a long way," he added.

Mr Dew sits on Cumbria Health Scrutiny Committee, which received a presentation this week about the new eating disorder service.

He welcomed the developments, but said there are also much wider issues that need attention - and that includes the current focus on tackling high obesity rates across Cumbria, which tops some league tables.

Although he accepts that obesity in itself can cause serious health problems, he is concerned that too much emphasis on children's weight could actually lead more to develop eating disorders.

He said the council recently signed a healthy weight declaration, pledging to do more to address the issues across the county.

But he said the focus must be on 'healthy', rather than 'weight'.

"I think the new Community Eating Disorder Service is a significant step in the right direction, and deserves our support.

"They've got limited resources. That's a national problem. We have to do the best we can with what we've got," said Mr Dew.

"What they are proposing is reasonable, but what we really want is for people not to get to that point in the first place.

"I made the point that healthy weight should be what it says, but in fact it's exclusively talking about being overweight. What about those who are underweight?

"If you keep banging on about obesity and fatness, you are going to end up with an even bigger eating disorder problem.

"I don't want people to be overweight, but neither do we want them going the other way either.

"It's like we are walking into it with our eyes closed.

"There are much wider social issues here. It's not just a case of telling people what to eat. It's far more complicated.

"It seems to me that we ignore issues for years then suddenly become evangelical about them. I just want us to approach it in an adult manner, to be responsible and have a balanced and open debate."

Mr Dew said he wants to see more education at all levels, to help prevent more young people getting ill.

"Prevention is key. We need to raise awareness and make it possible for children and adults to be more open about these disorders.

"People with eating disorders feel ashamed about it so they keep it hidden, but it is a big cause of suicide and early deaths."

He also has concerns about services for adults.

"For adults there is virtually no help unless you're at death's door. By that point it's virtually impossible to do anything about it," he added.

Efforts are under way to improve access to eating disorder services for children and young people across Cumbria.

At present, those with anorexia, bulimia and others problems can potentially be sent anywhere in the country if they need a specialist inpatient bed - putting extra pressure on families.

Waiting times are also exceeding national targets, leaving young people without the initial support they need.

Instead it is hoped that providing more early support in the community will help to prevent the need for admissions.

Rebecca Thompson, a clinical psychologist who works with young people with eating disorders, said the Community Eating Disorder Service (CEDS) has been developed in response to these challenges.

It will look after patients up until the age of 24, meaning those diagnosed near to the age of 18 will remain within the same service rather than having to transfer to adult services.

The new model also takes lessons from other areas which are currently meeting the expected waiting times.

She said the main focus will be on supporting families, using a non-blaming approach to tackle the eating disorder.

"It's about understanding from the family in the context of a potentially life-threatening illness. We do not say families are to blame, but they do have a part to play in recovery," she explained.

"We are asking parents to take the lead in managing healthy eating for their child, and empowering them to do this with support.

"There is a lot of psychoeducation involved. There isn't a specific medication we can give to them. Food is the medicine."

She said it is not a cheap approach as it requires a lot of professional time and efforts from everyone in the family. Nor is it a quick fix, with treatment generally taking between nine and 12 months.

But she said there is evidence that this approach gets the best results without long stays away from family support. There can also be long waits for beds to become available.

"One of the main aims is to prevent an inpatient admission. We look across to Middlesbrough initially for inpatient admissions, but if there's not a bed there then we will look anywhere else in the country. It's a big strain for families," she explained.

Those behind the new service faced questions from members of the Cumbria Health Scrutiny Committee last week.

Claire Driver, county councillor for Alston and chairwoman of the committee, said: "These are hugely complex issues.

"You've highlighted the difficulty in getting early diagnoses.

"It's clear that we are behind the waiting times, with urgent cases waiting over three weeks to be seen. How long has that been the case?"

Barry Chipchase, clinical director of the service, said he's been in post a year and it hadn't got any worse in that time.

Barry Chipchase He added that recent improvements, including staffing, are already improving access for children needing urgent help.

"We can now see children on the same day if necessary, or certainly within two to three days," he explained.

"In the past we had a system where all members of staff within children's services were having to balance routine work with emergencies.

"As a result, some of the routine work would be disrupted because staff had to go to Furness General Hospital or the Cumberland Infirmary in Carlisle.

"We now have dedicated members of staff to see people who come through that day, and keep them on until the routine service can pick up their case."

North/south divide?

The new eating disorder service is set to be rolled out in north Cumbria - but funding issues mean it will not be extended to the south of the county for the time being.

Mr Chipchase said they had initially planned it to be a countywide service, launching everywhere at the same time.

But although funds have been allocated by North Cumbria Clinical Commissioning Group (CCG) for the children and young people's service, the picture in the south of the county remains unclear.

It is understood that the Morecambe Bay CCG has decided not to fund the service at this time. Instead it is looking at whether it wants to commission a service similar to that already in place in Lancashire.

Child 1

This girl was referred by her GP in 2016, aged 15.

She had lost a third of her body weight over just five months.

Despite being intelligent and talented, there were problems in her peer group and a high level of focus on academic achievement and her dancing successes.

She was diagnosed with anorexia nervosa and admitted straight to a paediatric ward for initial monitored re-feeding.

Work also started alongside the family, to support recovery.

Weightloss stopped, and there was an initial increase, but it proved difficult to maintain progress.

It was decided to look for a specialist inpatient bed, but there wasn't one available immediately.

There was significant further weightloss during the wait.

She then had a long stay as an inpatient, for roughly a year with very gradual improvements, but never reaching where professionals had hoped on discharge. She is still struggling to maintain her weight in the community.

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Child 2

This girl was referred by her GP at just nine-and-a-half years old.

She had a history of being bullied and had noticed she was the heaviest in her class, resulting in her feeling 'fat and ugly'.

This was followed by a strong interest in body image, 'healthy' eating and exercising after meals.

She developed a high level of control over eating and got angry when challenged about it. She developed problems sleeping and suffered from mood swings.

Professionals began to work with her family to empower her parents to support her recovery and build confidence in feeding their daughter again. This involved meal plans, managing her activity levels, liaising with the school and her GP.

With increased physical health, her focus on her body and eating has reduced significantly and family relationships have improved.

Eating and activity are now moving back to 'normal' levels.

Where to get help

If you or anyone you know is struggling with an eating disorder, support is available from charity BEAT.

It has three helplines, open 365-days-a-year from 3pm until 10pm, or visit www.beateatingdisorders.org.uk.

Adult Helpline: 0808 801 0677

Studentline: 0808 801 0811

Youthline: 0808 801 0711